Monday, May 18th was Savannah’s complex bivent in Boston. Savannah was discharged from Boston Children’s Hospital on Wednesday, June 3rd. There was then one final slew of outpatient appointments on Friday, June 5th, then we busted out of Boston Children’s Hospital for the last time. That timeline was far faster than we had anticipated. We were planning on about 8 weeks in Boston, but she was out of there in less than 3!

Little did we know that the fun wasn’t nearly over. Our flight out of Boston was fairly late, like 8:30 PM. Thankfully, it was a direct Delta Airlines flight straight from Logan to Indianapolis. The boarding process wasn’t all that bad, except for the less than helpful gal at the gate. She kept commenting about all the stuff we were taking with us into the cabin and not checking. Mostly it was Savannah’s diaper bag, medical equipment, etc. Turns out, it was a good thing we kept it with it and didn’t check it.

About 15 minutes into the flight, Savannah started to get cranky. She started crying. It quickly reached inconsolable levels. She then proceeded to vomit. I think she ended up vomiting like 3 times during the flight.

Lori was very concerned, so I tried to maintain some degree of calm and called for the flight attendant. They thankfully carried spare oxygen on the flight, and that was what Savannah needed. She oxygen saturation levels dropped significantly once we reached altitude. It was certainly one heck of a way to learn of her new found altitude sensitivity. We believed that was really all it was.

Our flight was one of those once in a lifetime experiences though, at least we hope it will be. We officially became a medical incident for Delta, and they made that worrisome announcement asking if there were any doctors or nurses on board. Thankfully, there was an ICU nurse sitting right behind us. We were able to talk through some of the medical worries we had, plus Delta had ground contact with their medical team for reference and updates.

We had a priority landing in Indianapolis with paramedics meeting us at the gate. The boarded the plane and escorted Lori and Savannah out into the terminal, while I stayed back to gather all our stuff. Eventually, everyone was in agreement that she was stable since she was back on the ground. We ended up getting home early Saturday morning, but our time at home was short lived.

By Sunday morning, Savannah was showing signs that she was having trouble breathing. We called Cincinnati Children’s and explained the situation, and we made the collective decision to take Savannah to the Emergency Room at Cincinnati Children’s. While this is a nearly 3 hour drive, everyone involved wanted to have Savannah evaluated and checked out. We quickly backed our bags in case of an admission, loaded up the truck, and headed for Cincinnati.

As we walked in, we were just another family in the Emergency Room. That was until we explained the situation. At that point, they led us to one of 3 trauma bays. We quickly went from just another family in the ER to being on one of those TV shows about an ER. Doctors and nurses were everywhere. Lori stayed with Savannah, while I stepped out of the way and held up the wall while talking with one of the chaplains. They apparently get paged to every trauma.

After about 20 or 30 minutes, x-rays were taken, the vascular access team had an IV in her, and we were set for admission. So we went from leaving Boston on Friday, and by Sunday she was readmitted to Cincinnati Children’s.

We ended up staying inpatient in Cincinnati through Saturday, June 13th. There were several reasons. First, she had too much fluid on her lungs. This was making it hard for her to breathe. This also meant that she had to stay on oxygen most of the time. Then secondly, her bowels were backed up due to a blockage that had formed after her initial open heart surgery. Having too much poop still in there was also making it harder for her to breathe.

Eventually, we got her cleaned out and stooling regularly. We also have Savannah on a fair amount of diuretic to keep her fluid balance on the dry side. Getting her off of these medications is and will be a work in progress for a while. There are still lots of medications to manage, fairly strict feeding schedules, warning signs to watch for, and the list goes on and on. But even with all of that, at least we’re home!